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I applied originally in May 2012, turned down in September and appealed, turned down again in March 2013. Filed the appeal to the ALJ in May. The waiting list at the time was approx. 12-13 months so my guess is that I will still be waiting until June or July of 2014.I think I will get approved but hope the judge doesn't come back with an offer to reduce the back pay. I've heard they do that sometimes. Seems unfair to say "I'll grant your disability if you agree to forget about your back pay". I feel that I've been disabled years prior to even applying. (nobody to blame but me for that I guess)

And Greg and Jeff...LOL. Never felt better about failing a test. Ya, it's been a long trip down this road and the waiting gets discouraging. I've come to realize the system is designed to weed out people along the way. Just too bad that those who need it get poked with the cattle prod along the way.

Britchick,Thanks! I'm still not approved but the support along the way means a lot!

m.

(I started typing this while all of your replies were still pouring in. Hard to keep up with you all! lol.)

Hey Mitch , I hope the SS Dept. does not do to you what they did to me !

I waited over two years to see a Judge , My lawyer worked with me and The V.A. Doctors were very helpful knowing all of my issues . In the end it turns out it was almost like they wanted me to so broke that I would BEG them for me SSDI . I was told : " Give up all back pay or face the Judge and one wrong word and you are done ! " I sat there and cried . There was no option , I do not Gamble ! And that was a hard thing to hear from my lawyer . In the long run I did right , I went as long as I could before applying for SSDI and IF I had waited any longer would have been in a pickle I have a few tips I will share next time we talk

Hey Mitch , I hope the SS Dept. does not do to you what they did to me !

I waited over two years to see a Judge , My lawyer worked with me and The V.A. Doctors were very helpful knowing all of my issues . In the end it turns out it was almost like they wanted me to so broke that I would BEG them for me SSDI . I was told : " Give up all back pay or face the Judge and one wrong word and you are done ! " I sat there and cried . There was no option , I do not Gamble ! And that was a hard thing to hear from my lawyer . In the long run I did right , I went as long as I could before applying for SSDI and IF I had waited any longer would have been in a pickle I have a few tips I will share next time we talk

Weasel

yup. It's been a long haul. I'm going to be pissed if they try to pull that "give up your back pay" crap. I would like to hear from others that had that happen and how they made out... or not.Wonder what options you really have if that is presented.

I thought it was automatic that once approved, they pay from the date you applied. I was determined to have been disabled a year sooner than when I applied, but they only used the application date as to back pay.

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No, mine was retroactive to the date I was determined to be disabled -- so something like 11 months extra. IIRC there is a limit on how far back they will pay but can't remember what it was, maybe 15 months (?)

I have heard from research on a disability site (not a government site) that many people are faced with this predicament.

I did not apply for SSDI for years after I felt I was disabled. My mistake. It would be sad if they offered me such "a deal". If I felt I was capable I wouldn't have applied. End of story.

I also waited a long time , it was a hard decision to make . The hardest thing I ever did !

Bob was lucky , in that they gave him a full two year back payment . I really thought the condition of his health was what made them not want to cause another heart attack . On the other hand me having an AIDS diagnoses helped but not enough .

I had a weird situation with disability. When my daughter's father died, she received survivor's benefits. Her check was really low as her father hardly every worked. Then one day, all of a sudden, I got a letter about her payment going up a substantial amount, and the father's name listed on the letter was not correct. The last name was the same, but not the first. So, I contacted SSA and told them it was not right. The rep I talked to insisted it was correct. So, we just let it go.

So, when I was approved for disability, I got a letter from SSA stating that the back pay I would have received would be used to pay back SSA from when my daughter was receiving survivor's benefits. They stated she was overpaid. Now, that is just typical stuff when dealing with SSA, unfortunately.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I guess I just don't understand the mentality (yes, I know, government paper pushers .) that a Judge would make someone forfit back-payments if a person is declared disabled at the time of a hearing. Maybe not enough "proof" of disability if evidence mounts up along the legal journey?

I would like to hear from J.R. on this topic in more detail. Specifically, what can I do if presented with this option. Finding something online about this has not been easy.

I hope my detailed path through this process with the help of the many people who have posted here will be a learning tool for others.

Just trying to understand it all and get my ducks in a row.

By the looks of things, with over 5000 views so far on this thread, disability questions and answers are in the minds of many.

There is no understanding SSA, Mitch. I'm being reviewed right now because I work part time and have been told I could be cut off from SSDI and have to pay back all the pay since last November. All because last November I went over SGA by $24. BTW, the $24 over was because of being paid for a holiday.

Good luck with all this. Hopefully JR will tune in soon.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

There is no understanding SSA, Mitch. I'm being reviewed right now because I work part time and have been told I could be cut off from SSDI and have to pay back all the pay since last November. All because last November I went over SGA by $24. BTW, the $24 over was because of being paid for a holiday.

Good luck with all this. Hopefully JR will tune in soon.

Thanks Betty but I refuse to stop trying to understand the system. Very sorry to hear of your mess! I wish you could just send them a check for $24 and stop the madness.

Well, good luck. Just when I think I've gotten SSA's "rules" down, something changes. I believe they put out a new online "Redbook," (I think that's what it's called) every year. But, when you get right down to it, it's someone's decision that matters. So, I would imagine it would depend on the person, their preference, mood, etc.

I had actually never heard of having to forfeit back pay in order to get disability. That's a new one.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

It seems so hard to apply for SSDI around the country. I live in NYC and here if you are diagnosed with aids you can go to HASA and you will be assigned a case worker. If you are unable to work due to disability the case worker send you to apply for SSDI and you can do that in the same office as they are. I was sent there in 2009 and did not even have to fill out the massive paper work that I got from GMHC the lady just asked a round of questions since my personal info was in the system it took 15 minutes. Then I went back to my case worker and she said I will get a letter from Social security. After 4 months I got a letter to see there physicians and went to the appointment with reports and test results that I had picked up from my specialists a total of 7 different physicians. I also took my Meds 18 different and went to my appointment. Social security's physician just looked at me when I gave him the list of my doctors and medications and shakedown his head. I sat there with all notes and test results and the bag with my Meds and he told me to leave. 2 weeks later I got a letter that I was approved. I have a lot of issues and have been sent for all kinds of tests and second opinions from my primary doctor and also the fact that he told me to bring all notes and test results to my appointment was to much for that young SSDI doctor so he did not know what to do with all information.

I was lucky when I started Atripla, my system responded very well, but in other areas I was not that lucky, have very bad neuropathy in hands, arms, feet and legs tried all kind of medications saw 2 neurologists and 2010 I had to go on heavy pain killers and it just get worse and worse with no return. I'm also lucky to have a private LTD insurance and they have started to give me problems the last 2 months. Every other day I feel like I should just give up the Meds and let life have his way so I don't have to fight with them.

I was lucky when I started Atripla, my system responded very well, but in other areas I was not that lucky, have very bad neuropathy in hands, arms, feet and legs tried all kind of medications saw 2 neurologists and 2010 I had to go on heavy pain killers and it just get worse and worse with no return. I'm also lucky to have a private LTD insurance and they have started to give me problems the last 2 months. Every other day I feel like I should just give up the Meds and let life have his way so I don't have to fight with them.

I hear your frustration but it's really not worth paying them the attention that you seem to be focusing on.Your life is about you, not them. Period.Also sorry about the pain you are dealing with. There are many people here that can relate. Reach out and ask questions. that is what these forums are about. (do a few searches on the topic on the forums to learn what others have said. .)hope you get some relief from your pain.

It's been ages since my last post here because of the waiting game but thought i would keep the same thread going so that others see the lengthy process.

Just a bit of background...turned down twice since filing and was waiting for my hearing date.

Well, today I received a letter from the SSA requesting several tidbits (lol) of information so that they can determine whether or not they can make a determination in my favor without having a hearing.

They are requesting ALL of my medical records starting from one year prior to the date I claimed that I was disabled to the present. That would be (i think) since December of 2010. Wow!

Also completed recent medical treatment, medications and work background questionnaires.

If they cannot make a decision on the record they will schedule a hearing.

I called my ID doc's office since that is the bulk of my records and they said I had to make a request in writing with the the Medical Records Department and that it would take 2-4 weeks to receive them.

after a quick read of previous posts, i'll throw my experiences in for perspective

i lost back pay, my disability onset date was determined not the date i started the process, but the date i was admitted to the hospital this year

aids dx did not help my case whatsoever

neither did wasting, or myelitis

suspicion of TB is what is listed. i do not, did not, and have never had tb. the county i live in compelled me to take tb meds, a nurse came to my home daily to give me a cup of pills and watch me swallow them.

i have since conclusively tested negative for tb.

i lost half of foodstamp when ssi started, expect to lose the rest once ssdi payments begin, 5 months after disability onset date

in the meantime, i get ssi, but i do not know if that will continue when ssdi kicks in. they call it concurrent, but no one seems to have an answer if i will or will not be concurrent.

my fear is that someone in the chain of communication is going to cry foul over the whole TB thing. it made no sense to me at all.

Zach, from what I understand is your ssi will stop once your ssd starts like you , I'm waiting my 5 months right now too. My ssd will start in Aug but I won't get a check till Sept, so until then I get ssi which I get the first of the month and in Sept it will switch to the 3. I think the only way you will still get ssi is if your ssd is not as much as your ssi and I believe they will make up the difference with ssi

I don't even know how to begin replying to all of that. Thanks for listening to my saga. I really do hope it works out for you but I would encourage you at the same time, if you are up to the crapola, to delve into the unanswered questions. The system really sucks on the way to disability. I haven't dealt with SSI so I don't know the "rules" let alone your transition into SSDI. I truly wish you smooth sailing if that is even possible. It's exhausting but what other choice do we have?

What boggles my mind more than anything else is that I doubt more than 5,000 or so people on the entire planet have been living with this bugger longer than me (or is it I) out of the 30+ MILLION infected.

I'm one of the oldest living guinea pigs and our government still is unable to determine if I am disabled? I have read about others that have been poz for 25 years and still are able to work but I was fading fast at that point. Heck, I didn't even apply until I was 29 years pos. This October will mark my 32nd year.

the story is thats where he proposed. i've stood there, its on my families property, i've thought of reproducing the shot with a cousin thats engaged. she's got a board on pinterest she thinks i haven't seen with ideas for wedding pictures. my wicked self is gonna make her cry with this idea

Zach, whether or not you continue to get SSI once your SSDI becomes active depends on how much your SSDI is. I do not know what SSA considers "too low" on SSDI, but if your SSDI is below whatever SSA has determined is "too low" of an amount, SSI will make up the difference. This much I do know.

Mitch, I know how frustrating dealing with SSA is, and I know you know this. I hope your meeting with your lawyer goes well and that you get all the back pay you deserve, because you do deserve it. You've been through hell with this. Hang in there sweetie, I have a good feeling about this. Once SSA gets all your medical records, they may take a look at the huge stack, and decide they don't want to sort through them all and give it to you based on that.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I couldn't remember the date that was put down as my disability start date when we filed. I asked my attorney last October and after fingering through my file she said it was 12/31/11. Well, when i went to see her to sign some medical release forms I found out that the date we used was 1/1/2006!

Now I have to dig through my medical files to see what she needs to request from my docs starting 1/1/2005. 14 1/2 years of records!

Oh M, you poor thing. I wish you could just blink your eyes and make it appear.

Does your attorney give any guess of how long she believes this may continue to take?

It wasn't as bad as expected sifting through my records but after a few hours it brought on a headache.

My attorney is lazy and this is not her area of expertise. She hasn't a clue as to how long this will go on but I suspect once we submit the requested info which will probably take 4-6 weeks to gather we will get a hearing date sometime in November or December. Just my guess.

It's been ages since my last post here because of the waiting game but thought i would keep the same thread going so that others see the lengthy process.

Just a bit of background...turned down twice since filing and was waiting for my hearing date.

Well, today I received a letter from the SSA requesting several tidbits (lol) of information so that they can determine whether or not they can make a determination in my favor without having a hearing.

They are requesting ALL of my medical records starting from one year prior to the date I claimed that I was disabled to the present. That would be (i think) since December of 2010. Wow!

Also completed recent medical treatment, medications and work background questionnaires.

If they cannot make a decision on the record they will schedule a hearing.

I called my ID doc's office since that is the bulk of my records and they said I had to make a request in writing with the the Medical Records Department and that it would take 2-4 weeks to receive them.

How much fun is this?

Anyway, I'm happy to see the progress.

Mitch,

Most initial denials of SSA disability benefits are due to insufficient evidence (medical records) to approve the claim. Making sure your medical records are sent to SSA is extremely important, requiring follow-up with the provider you are requesting them from. Whatever other information SSA is requesting (regardless how silly or repetitive) make sure to send expeditiously. Keep in mind when answering questions related to function, pain, etc., make sure to detail how these issues restrict your daily activitites. Fatigue, diarrhea, depression, all of it.

It is also prudent to contact the Disability Determination Service Adjudicator who is handling your case to make sure they received everything.

Can't express how important this all is, because not doing it could delay your claim for another year.

1. Supplemental Security Income (SSI) is a Social Security needs-based disability program for people who haven't worked enough to garner enough credits to receive Social Security Disability Income (SSDI). Approval for SSI is two-fold. First, you medical claim has to be approved, then your assets have to be taken into consideration. You cannot have over $2000 in any bank account at any given time. You can own (1) home and (1) car. Retirement accounts, stocks, bonds etc are all considered assets and calculated in determination. The monthly amount paid for SSI for 2014 is $721. This amount can be reduced by 1/3 if someone else provides your housing and food. Automatically eligible for Medicaid.

SSI benefits began one-month waiting after your initial application. You are required to report any change in assets greater than $2000.

2. Social Security Disability Income (SSDI) is an insurance program provided by Social Security for people who have worked and achieved enough work credits to qualify. The Matrix how this is determined is provided by SSA here:

SSDI is not income-based, meaning, your assets are not taken into consideration but you still have to meet the medical requirements to receive disability benefits. The maximum amount of SSDI you can receive monthly in 2014 is $2642. Your monthly benefit is determined by how much money you paid into the system the last ten best earning years of your working years.

SSDI benefits begin after a five-month waiting period after the month of your established onset of disability. You are not required to report any change in assets. Medicare eligibility becomes effective 29 months from the established onset date of disability (24 months after 5 month waiting period).

3. Concurrent SSI/SSDI Claims:

There are times when people who have little to no assets qualify for SSI and SSDI because they also have enough required work credits.

This is how it works:

Once you medically qualify for disability payments, you will be paid SSI $721 monthly for the first six months (minus 1st month), and then then SSDI payments beginnning the sixth month going forward.

If your SSDI claim amount is > than $721, your SSI payments payments will cease at month six and you will continue to be an SSDI recipient. Medicare eligibility begins in 24 months.

If your SSDI amount happens to be less than $721 monthly, you will automatically qualify for SSI. The distinction here, being, that you would immediately qualify for Medicaid while waiting for Medicare eligbility in 29 months. This is considered a concurrent claim.

My attorney received a more detailed letter from them and it showed what records they already have. We are just supposed to fill in the holes for the time period they are requesting.

I had a physical assessment test about a year ago that showed objective proof of my disability. This will be an important part of the whole package.

As far as filling out those function, pain, etc. forms, my attorney did a pretty good job relating it to my daily activities. I've been told that I am too honest but her guidance did help. Sometimes when I'm feeling rather well I tend to forget or downplay how the aidsy stuff takes a toll on me when I'm feeling like crap. She took care of that! lol.

If they still can't make a determination after this batch of additional records a ALJ hearing will be scheduled. I'm not sure at that point, having all of my medical records already, what more they will be looking for. Maybe I should go on a strict diet and loose 20 pounds. (just kidding)

ps- I'm further into this process than you may realize. I applied well over 2 years ago for SSDI. I've read all of what is available online from the government SSDI website but it was good of you to post it here anyway for others to see.

FYI, on February 26, 2014, The Social Security Administration has published a Notice of Proposed Rule-Making (NPRM) in the Federal Register to alter the listings for Human Immunodeficiency Virus (HIV) Infection disability claims.

I'm not sure why they didn't wait for the medical records that they requested. The hearing will be held in Hartford via video conference with the judge being in Rhode Island. I think Hartford is short staffed still.

Thanks you guys. The congrats will be needed after the hearing I hope.

Planning on writing a compelling letter to attach to this next batch of paperwork from the standpoint of a LTS living 32 years with this bugger. I know the medical reports have the most weight but... who better than me to explain to the judge to get him to understand that I'm one of the oldest guinea pigs around and that there is much more going on that won't show up in a blood test?

Oh! And my attorney called them back today and asked if it would be ok if we had the hearing in person (in Rhode Island). They said no problem so a face to face hearing it shall be.

Thanks you guys. The congrats will be needed after the hearing I hope.

Planning on writing a compelling letter to attach to this next batch of paperwork from the standpoint of a LTS living 32 years with this bugger. I know the medical reports have the most weight but... who better than me to explain to the judge to get him to understand that I'm one of the oldest guinea pigs around and that there is much more going on that won't show up in a blood test?

Oh! And my attorney called them back today and asked if it would be ok if we had the hearing in person (in Rhode Island). They said no problem so a face to face hearing it shall be.

Mitch, if are eventually approved, it will likely be based upon vocational allowance since your medical records don't have specific data to indicate you are eligible under the HIV listing alone (legal definition). Your other ailments will be taken into consideration. At this point in the process, the most important thing you can communicate to any Administrative Law Judge/Vocational Expert who are present at your hearing, is "how your level of function has been limited by HIV, your other ailments and medications you take." Trust me, they will ask you many questions about it, so prepare yourself accordingly. It is your responsibility to provide details of how your function is limited, evidence that you are taking prescribed therapy (continue seeking medical treatment) and how these limitations effect your ability to work. Be bluntly honest and don't embellish and you should be fine.

Your chances of being approved exponentially increase at the hearing level. Good luck.